Rare Genes Leap Into Awareness

How do you get the general public's attention rousing interest in a rare chronic disease? As a patient advocate and ambassador for Gaucher disease, I have written about every aspect imaginable of living with a rare disease.

Elaine Benton
Author and blogger battling two chronic diseases while maintaining a positive attitude and sense of humor

When I was a child, growing up in England, there were few days celebrated such as Valentine's Day, Mother's Day, Father's Day, and Pancake Day. However, today there's seems to be a special day, week or sometimes even an entire month dedicated to marking an important cause. I think it's safe to say most of us know a pink ribbon signifies breast cancer, but what would you associate with a blue denim genes ribbon? To give you a clue, it's not the ribbon's colour that is so important, but rather the word "genes" (and no, I haven't made a spelling faux pas). The clever play on words was thought of and adopted last year, to represent rare diseases. "Rare Disease Day" was conceived nine years ago and is marked on the last day of February every year by the international rare disease community. The theme for this year is "Patient's Voice".

How do you get the general public's attention rousing interest in a rare chronic disease? As a patient advocate and ambassador for Gaucher disease, I have written about every aspect imaginable of living with a rare disease. Bringing greater awareness to rare diseases can be a tall order, for such a topic, is clearly devoid of anything remotely sensational or sexy, but it's a subject that lies close to my heart, and often pushes me forward, making me step out of my comfort zone, to do things I never dreamt I would do.

Having dinner with friends recently, the conversation was lively and enjoyable, covering many topics from books and films, to the virtues of daily exercise, our beloved pets, and of course no discussion would be complete without solving the problem of world peace! Being driven to educate, no one can sit in my company for an entire evening and hope to escape without hearing about what has kept me so busy for the past five years. Lucky me, (I say with great sarcasm) living with two diseases: Gaucher and Parkinson's; one very rare and one very common disease, keeps me out of mischief as I campaign, hoping to help spread greater awareness through public speaking and writing. I went on to explain to my friends about "Rare Disease Day" and how patients and their families worldwide would be marking the day in various ways by coming up with new and creative ways of spreading the word. Last year, wearing my blue denim jeans ribbon, I found people were asking me what it stood for, which opened the door for me to explain about my personal experiences of living with a rare disease.

A picture is worth a thousand words, so they say, especially in today's high tech world, no one has the time or patience to read, and attention spans are short. This is where cartoons can effectively get a message across, imparting information, expressing opinions and making a statement. It was with this in mind that my friend, who has been a Cartoonist for over forty years, kindly offered to donate a cartoon especially for Rare Disease Day, to accompany this article. I would like to thank my friend, Yaakov Kirschen for his donation, courtesy: "The Dry Bones Academy" which can be re-posted and used by anyone to promote Rare Disease Day.